Carenote from Support Group Leader

Welcome to CareNotes. In this special section we will feature a reader's letter and provide an opportunity for an interactive exchange that will help find some answers and possible solutions to concerns.

Support for Support Group Leader

I am a co-facilitator of a local Alzheimer's support group. The trouble I am having is that the caregivers are dealing with various stages of the disease and some have already lost their loved ones. How do you satisfy all and not make others feel uncomfortable? You want to address the different stages of the disease and yet you want to comfort the caregivers who are no longer caregiving. I pass along articles from your website and from handouts I receive from the local Alzheimer's Association office, but sometimes I feel somewhat defeated in trying to help them all. I know you can't help all or satisfy all, but I am getting a little discouraged.

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Comments (6)

Support Group

I started a grief group for the ones whose loved ones passed.

Amelia284 days ago

Support Group Advice

I belonged to a support group that was for both those receiving care & the caregivers. In my opinion, that's why it didn't work. I think it would be best if you had a group for current caregivers & one for those going through bereavement.

Luanne318 days ago

Support Group Advice

I have been to a couple groups that have operated the same way. Everyone gets a few minutes to share their situation and usually there is a concern of the month that is presented. Others can comment if they have experienced something similar, or just listen if they have nothing to add. My parent was diagnosed 10 years ago, so I did a lot of listening in the beginning! What I have found is that "too much info" was not depressing but preparation for me for what was to come. When the quirks of the disease presented, I was surprised at how much I recalled from those previous discussions. It made me a more confident caregiver. I am so grateful for my support group because those are the only folks that really understand my situation and encourage me on a different level than say perfectly well meaning friends who politely inquire "How's your Mom?" A support group is all about the caregiver!

I wouldn't worry about trying to please everyone because there is a natural drop out rate and those who come regularly quickly become involved in all of the various care stories. It may be a weird reason for friendship, but I still keep in touch with folks who have attended my groups.

Marianne342 days ago

Suppoprt group leader advice

I think it is important to address the needs of the diverse groups separately. I joined a grief support group and was dragged down by the situations of people who had ALREADY lost their loved one. Being at different stages along the path requires different support!!!! Eventually I realized I was giving away my energy to the needier people in the group, much to my own detriment!!

Nancy G Taylor342 days ago

Let the group support each other

Allow the support group people to share with each other from experience. Restrain from commenting and let them feel worthwhile in coming. See if you can stay silent for less than 3 minutes of the entire time together. Let them take 7 minutes each to share and get feedback from each other and not you. I am in a group that has caregivers whose loved ones have died and have a wealth of info to give. There are also those who are wondering if a loved one has dementia and how to get the process started. What is is like to have a loved one on hospice care and then no longer qualifies for hospice? You need to listen and learn from them. Think of them as your professors and allow them to respond to each other.

Jane Grudt343 days ago

Dear Support Group Leader

I, too, facilitate support groups for caregivers. We try not to focus too much on the disease or disability, but on the caregiver (after all they are coming to the group to help themselves). We use the time to allow caregivers to express their emotions and difficulties in coping rather than getting into details on stages of illness, meds, treatments, etc. We talk about grief, isolation, exhaustion, resentment, fear, etc. and how to make emotional and spiritual changes that can have lasting effects. Everyone can relate to emotional struggles no matter what phase of care your loved one is in. www.TheHeartoftheCaregiver.com